hey guys, just wanted to add a website that i found as a reference from another article, its the official site of the human genome project, its a government site, and so im sure the info is reliable and well done. here's the link: http://www.genome.gov/20019523
Questions:
Should employers be able to screen job applicants for specific genetic conditions?
Who should have access to this information: family members, lawyers, insurance agencies? Sociologist Information:
Sources:
Carroll, Marion L., and Jay Ciaffa. "The Human Genome Project: A Scientific and
Magill (Executive Director & Department Chair,Center for Health Care Ethics),
Gerard. "Ethical Perspectives On Mapping The Human Genome." Health Care
Ethics USA. 2001. Center for Health Care Ethics\ Saint Louis University. 29
May 2008 <http://chce.slu.edu/hceusa/1_2001_1.html>.
National Institutes of Health. "How will genome-wide association studies benefit
human health?" Genome-Wide Association Studies. 6 Mar. 2008. National Human
Genome Research Institute . 29 May 2008 <http://www.genome.gov/
20019523>.
Web Evaluation:
My source is http://chce.slu.edu/hceusa/1_2001_1.html which was published in 2001 by Professor Gerard Magill, PhD, Executive Director & Department Chair, Center for Health Care Ethics. This source was written to compare the pros and cons of the Human Genome Project and to discuss the ethical concerns regarding the project. It gave a brief, but comprehensive introduction to the human Genome Project and was precise in its evaluation giving specific examples when needed to back up different view points. I feel that this source was slightly biased in its evaluation of the Human Genome Project, focusing more on the negative issues such as confidentiality and discrimination issues or even the more questionable procedures involved in curing genetically transmitted diseases. And although it has a decidedly pessimistic viewpoint of the problems of gene mapping, it is detailed and well written providing a lot of helpful information. I would recommend this site to other students because of deviated standpoint which offers a contrasting view to the more positive articles written on the Human Genome Project.
Lawyer Information:
Birth Defects Prevention Act of 1997:
Gives birth defects research programs the right to provide data and research needed to study:
Clusters of birth defects
Identifying their causes
Developing and evaluating prevention efforts
Secretary of HHS (Health and Human Services) is allowed to operate centers for the conduction of applied birth defect prevention research
Allows non-profit organizations to develop public awareness strategies to educate against birth defects
Also provides funding for the above: 30 million in 1998 and 40 million in 1999
Americans with Disabilities Act of 1990 (ADA):
Title I:
Prohibits employers from discriminating against qualified job applicants and workers who are or who become disabled
Title II:
Prohibits state and local governments from discriminating against disabled persons in their programs
Sets forth the accessibility requirements for public entities (makes it hard for other people to see private information)
Title III:
Prohibits private companies that provide public accommodations (hotels, restaurants, trains, airports, etc) from denying goods and services to people based on their disabilities
Sets forth requirements for special accessibility to accommodate people with disabilities
Title IV:
Makes devices for hearing and speech impaired available
Mandatory standards telephone companies must maintain to be in compliance with the ADA
Title V:
Miscellaneous provisions for people with disabilities
The Health Insurance Portability and Accountability Act of 1996:
States:
No insurer can exclude someone from insurance based on health status, or refuse to renew their insurance if a health issue develops over time
The Genetic Information Nondiscrimination Act (GINA):
Expected to pass in late May of this year
States:
Insurance companies cannot discriminate through reduced coverage or pricing based on information derived from genetic tests
Insurers and employers are not allowed to request or demand a genetic test
Means that Americans are free to undergo genetic testing for diseases without fearing for their job or health insurance
About the Policies:
No legislation has been passed relating to genetic discrimination in individual insurance coverage or to genetic discrimination in the workplace
Primary concerns addressed by laws:
Insurers will use genetic information do deny, limit, or cancel insurance policies
Employers will use genetic information against existing workers or to screen potential employers
Samples will be used for purposes other than those for which they were gathered
State Individual laws:
Alaska:
Prohibits health insurers from discriminating in eligibility for insurance on the basis of genetic information
All hospitals and physicians that care for newborns must administer tests for phenylketonuria, mental retardation, and physical handicaps that may develop. If a parent refuses to allow administration of the test, they will be fined
Prohibits group healthcare insurers from excluding a person from coverage only on genetic information, as opposed to a formal diagnosis
Alabama:
Health insurers are not allowed to require genetic testing for a predisposition, nor are they allowed to discriminate in rates or benefits based on the results of a genetic test, specifically for cancer and sickle cell anemia
All hospitals and physicians that care for newborns must administer tests for phenylketonuria, hypothyroidism, sickle cell anemia, sickle cell trait, and other tests relating to mental retardation and other heritable diseases. Parents who object on grounds other than religious will be fined
Pennsylvania:
Medical information related to an adoptee must include information about biological parents, as the information may be relevant to potential hereditary or medical problems in the adoptee’s future
Parents have the right to update medical history information of their child
Medical history information must be included in the adoption report
All hospitals and physicians that care for newborns must administer tests for phenylketonuria, maple syrup urine diseases, sickle cell disease, and other congenital and metabolic diseases. The only way a parent or guardian can refuse testing is on religious grounds.
all information for everything that makes you who you are from eye color, to skin color, to allergies, is stored in your DNA.
Scientists call an organism’s total DNA their genome which comes from the blending of the words gene and chromosome
Scientists believe that with the help of the Human Genome, they will be able to fix genetic disorders caused by errors in someone’s genes or chromosomes by designing techniques to fix these errors.
The human genome contains more than 3 billion nitrogenous base pairs.
The project was created in October of 1990 with funding provided by the U.S. government/
The project’s focus was to map and sequence all the DNA in hman chromosomes (meaning that they had to figure out on which chromosome a gene lies, and where it is located on this specific chromosome. Next they had to figure out the actual DNA sequence, the specific order of As, Cs, Ts, and Gs in the genome.
The goal date of completion was 2005
The Project was headed by Francis Collins, but at the same time another group was trying to figure out the genome using private funding. This group was headed by J. Craig Venter.
Venter and his colleagues decoded the first free living organism in 1998, it was a bacterium.
He then started a new company called Celera Genomics that had access to gene-sequencing machines. He stated that the project would be done in 2001
In June of 2000, Venter and Collins independently decoded the Human Genome at approximately the same time.
Now they must identify genes and what the do.
97% of the human genome is made up of junk DNA
Researchers must weed out junk DNA to locate key genes
Scientists hope that they will be able to control genes, for example “turning off” genes that contribute to obesity
The genome project also discovered that the number of human genes is between 50,000 and 70,000 unlike original estimates that assumed the genome contained as many as 100,000 genes.
Notes from A Genome Milestone:
The race between the two teams was the biggest scientific grudge match since the space race.
Francis Collins (leader of gov’t side) and Craig Venter (founder of Celera Co.) agreed to hold a press conference in Washington to declare that both sides had one and the race was over, but both teams continue to work, as the “completion” was really only a rough draft of the Genome.
Notes from The Human Genome Project is beginning to bear fruit
Last year, scientists discovered which specific DNA sequences coded for various diseases including cancer, diabetes, blindness, and AIDS.
New discoveries are being published in many scientific journals almost weekly.
Latest discovery is that two small changes in DNA can add more than one inch to someone’s height.
New technology is allowing a person’s ENTIRE GENOME to be read rapidly and cheaply.
Notes from genomics.energy.gov Timeline: 1999: First Human Chromosome is Completely Sequenced by the Human Genome Project researchers (chromosome number 22) 2000: HGP leaders and President Clinton announce completion of “working draft” of DNA sequence 2001: Publication of Initial working draft sequence (February 12, 2001), chromosome 20 becomes third chromosome completely sequenced to HGP high quality standards 2003: Human Chromosomes 6, 7, Y, 14, completed 2004: Human Chromosomes 5, 9, 10, 19, 13 completed, human gene count changed to 20,000 to 25,000
pp“Scientists Map Human Genome New Era in Medical Research Hailed." Facts On File World News Digest 29 June 2000. Facts On File World News Digest. Facts On File News Services. 21 May2008 <http://www.2facts.com>.
I used www.genome.gov for some of my research on teh Human Genome Project. The ".gov" indicates that the website is used by the federal and state government entities in the US. The information on the site is written and often edited by members of the National Human Genome Project Research Institute and most of it has been updated in 2008. Some information was edited last in 2007. The goal of the website is to proviede information to the public about the International Human Genome Project. The information comes from researchers on the project. The site is a branch of the website for the National Institutes of Health provided by the US Department of Health and Human Services. The site from which it branches (the National Institutes of Health site) is www.nih.gov. I believe that this is a reputable website with valid information.
Educator Information:
HGP Issues CONS
Huge Identity Crisis
Others getting a hold of peoples’ identities could manipulate DNA to “copy” that person
Unauthorized “cloning”
What if someone’s map is stolen or lost? And someone uses it?
Greatly reduces the genetic diversity
Eventually, as manipulated generations continue, it would get to the point where the majority of the population would be essentially “perfect”
Employers
Would chose the applicant with the best of all genomes
Not fair what genetically dealt
If in a case of showing the genomes was optional, employer would take known v.s. unknown
Expensive to map genes, unfair to poorer people who can’t afford it v.s. people who can
Change Human Behavior
Different behavior to those who are “less genetically perfect”
Ex: wouldn’t date someone who was supposed to die at age 30
Life expectancy panic
People unhappy with babies’ life expectancy could reject them
Genetic Discrimination
Could create superior race or
A desired “breed”
Discrimination against certain genders
·Gender preference in China Economic Collapse oLife/Health Insurance Agencies §Wouldn’t need to insure the longer living humans §Wouldn’t want to cover someone with a little life expectancy §Overall, them going out of business oDoctors, Medical Personale §Receiving less work from patients as they become more and more “genetically perfect” ·Positive- by doctors knowing what any patients’ DNA is, treatment for other diseases would become easier ·Geographical Issues oHow can people in, for example, in Africa receive or even afford their maps? oWho’s going to do theirs?
* PROS ·Virtually eliminate genetic born diseases oManipulate DNA and alleles to rid the human race of genetically inherited diseases oFocus science and funding on other “uninherited” diseases oSave a lot of lives oControl birth defects §Possible negative of this—population growth with fewer limiting factors ·Wanted Information oSome people may want to know their limitations (i.e. death, cause of death, life expectancy etc…) oPeople would be happy with the way they look or are genetically built ·Open access will rapidly progress scientific discovery OTHER ISSUES
Government control
What could they do with it?
Possibly exclude from others that are not the genetically best
How will they handle all the pros and cons?
Can the people trust them?
What if this information falls into the wrong hands?
Who should control all this information?
Who gets to see it?
Should there be a huge database?
What can they do to protect the country from a huge potential identity crisis?
ALLISON'S WEB EVALUATION:
The U.S Department of Energy Office of Science, Office of Biological and Environmental Research, Human Genome Program sponsers and supports the site, however there was no more specific author named. It was last updated August 29th, 2006. The is a government website. It proved to be more factual and provide a fair amount of unbiased information. It was more straight forward information rather than opinionated. The website is pretty effective depending on your role in the project. My role was very based on "hypothetically speaking" rather than fact though. I would recommend this site for the use of the role of lawyer because it offered very factual and relevent information mainly from the legal perspective. Other information/resources:
hey guys, just wanted to add a website that i found as a reference from another article, its the official site of the human genome project, its a government site, and so im sure the info is reliable and well done. here's the link:
http://www.genome.gov/20019523
Questions:
Should employers be able to screen job applicants for specific genetic conditions?
Who should have access to this information: family members, lawyers, insurance agencies?
Sociologist Information:
Sources:
- Carroll, Marion L., and Jay Ciaffa. "The Human Genome Project: A Scientific and
Ethical Overview." An ActionBioscience.org. 2000-2008. 29 May 2008<http://www.actionbioscience.org/genomic/carroll_ciaffa.html>.
- Magill (Executive Director & Department Chair,Center for Health Care Ethics),
Gerard. "Ethical Perspectives On Mapping The Human Genome." Health CareEthics USA. 2001. Center for Health Care Ethics\ Saint Louis University. 29
May 2008 <http://chce.slu.edu/hceusa/1_2001_1.html>.
- National Institutes of Health. "How will genome-wide association studies benefit
human health?" Genome-Wide Association Studies. 6 Mar. 2008. National HumanGenome Research Institute . 29 May 2008 <http://www.genome.gov/
20019523>.
Web Evaluation:
My source is http://chce.slu.edu/hceusa/1_2001_1.html which was published in 2001 by Professor Gerard Magill, PhD, Executive Director & Department Chair, Center for Health Care Ethics. This source was written to compare the pros and cons of the Human Genome Project and to discuss the ethical concerns regarding the project. It gave a brief, but comprehensive introduction to the human Genome Project and was precise in its evaluation giving specific examples when needed to back up different view points. I feel that this source was slightly biased in its evaluation of the Human Genome Project, focusing more on the negative issues such as confidentiality and discrimination issues or even the more questionable procedures involved in curing genetically transmitted diseases. And although it has a decidedly pessimistic viewpoint of the problems of gene mapping, it is detailed and well written providing a lot of helpful information. I would recommend this site to other students because of deviated standpoint which offers a contrasting view to the more positive articles written on the Human Genome Project.
Lawyer Information:
SOURCES:
http://www.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml
http://www.kumc.edu/gec/prof/geneelsi.html
http://www.genome.gov/PolicyEthics/LegDatabase/pubMapSearch.cfm
Scientist Information:
Notes from The Genome Project
- all information for everything that makes you who you are from eye color, to skin color, to allergies, is stored in your DNA.
- Scientists call an organism’s total DNA their genome which comes from the blending of the words gene and chromosome
- Scientists believe that with the help of the Human Genome, they will be able to fix genetic disorders caused by errors in someone’s genes or chromosomes by designing techniques to fix these errors.
- The human genome contains more than 3 billion nitrogenous base pairs.
- The project was created in October of 1990 with funding provided by the U.S. government/
- The project’s focus was to map and sequence all the DNA in hman chromosomes (meaning that they had to figure out on which chromosome a gene lies, and where it is located on this specific chromosome. Next they had to figure out the actual DNA sequence, the specific order of As, Cs, Ts, and Gs in the genome.
- The goal date of completion was 2005
- The Project was headed by Francis Collins, but at the same time another group was trying to figure out the genome using private funding. This group was headed by J. Craig Venter.
- Venter and his colleagues decoded the first free living organism in 1998, it was a bacterium.
- He then started a new company called Celera Genomics that had access to gene-sequencing machines. He stated that the project would be done in 2001
- In June of 2000, Venter and Collins independently decoded the Human Genome at approximately the same time.
- Now they must identify genes and what the do.
- 97% of the human genome is made up of junk DNA
- Researchers must weed out junk DNA to locate key genes
- Scientists hope that they will be able to control genes, for example “turning off” genes that contribute to obesity
- The genome project also discovered that the number of human genes is between 50,000 and 70,000 unlike original estimates that assumed the genome contained as many as 100,000 genes.
Notes from A Genome Milestone:- The race between the two teams was the biggest scientific grudge match since the space race.
- Francis Collins (leader of gov’t side) and Craig Venter (founder of Celera Co.) agreed to hold a press conference in Washington to declare that both sides had one and the race was over, but both teams continue to work, as the “completion” was really only a rough draft of the Genome.
Notes from The Human Genome Project is beginning to bear fruit- Last year, scientists discovered which specific DNA sequences coded for various diseases including cancer, diabetes, blindness, and AIDS.
- New discoveries are being published in many scientific journals almost weekly.
- Latest discovery is that two small changes in DNA can add more than one inch to someone’s height.
- New technology is allowing a person’s ENTIRE GENOME to be read rapidly and cheaply.
Notes from genomics.energy.govTimeline:
1999: First Human Chromosome is Completely Sequenced by the Human Genome Project researchers (chromosome number 22)
2000: HGP leaders and President Clinton announce completion of “working draft” of DNA sequence
2001: Publication of Initial working draft sequence (February 12, 2001), chromosome 20 becomes third chromosome completely sequenced to HGP high quality standards
2003: Human Chromosomes 6, 7, Y, 14, completed
2004: Human Chromosomes 5, 9, 10, 19, 13 completed, human gene count changed to 20,000 to 25,000
SOURCES: The Genome Project by Lisa Cahil
http://web.ebscohost.com/pov/detail?vid=6&hid=12&sid=02af0096-309c-49a9-acf8-e47486ff36a6%40sessionmgr104
Mapping the Genetic Highway by Mark Nichols DO NOT USE THIS SOURCE: WRITTEN IN 1999 BEFORE HUMAN GENOME PROJECT WAS ACTUALLY COMPLETED.
http://web.ebscohost.com/pov/detail?vid=6&hid=12&sid=02af0096-309c-49a9-acf8-e47486ff36a6%40sessionmgr104</span>
A Genome Milestone by Thomas Hayden
http://web.ebscohost.com/pov/detail?vid=6&hid=12&sid=02af0096-309c-49a9-acf8-e47486ff36a6%40sessionmgr104
pp“Scientists Map Human Genome New Era in Medical Research Hailed." Facts On File World News Digest 29 June 2000. Facts On File World News Digest. Facts On File News Services. 21 May2008 <http://www.2facts.com>.
CITATIONS:
p“Scientists Map Human Genome New Era in Medical Research Hailed." Facts On File World News Digest 29 June 2000. Facts On File World News Digest. Facts On File News Services. 21 May2008 <http://www.2facts.com/stories/temp/61313temp2000178540.asp?DBType=News>. p
Hayden, Thomas. “A Genome Milestone.” Newsweek. Jul. 2000: 136 Ebscohost. 19 May 2008 <http://web.ebscohost.com/pov/detail?vid=3&hid=117&sid=76ef197c-2bc5-4d0f-870b-6b8c585c6b5e%40sessionmgr104>.
WEB EVALUATION:
I used www.genome.gov for some of my research on teh Human Genome Project. The ".gov" indicates that the website is used by the federal and state government entities in the US. The information on the site is written and often edited by members of the National Human Genome Project Research Institute and most of it has been updated in 2008. Some information was edited last in 2007. The goal of the website is to proviede information to the public about the International Human Genome Project. The information comes from researchers on the project. The site is a branch of the website for the National Institutes of Health provided by the US Department of Health and Human Services. The site from which it branches (the National Institutes of Health site) is www.nih.gov. I believe that this is a reputable website with valid information.
Educator Information:
HGP Issues
CONS
- Huge Identity Crisis
- Others getting a hold of peoples’ identities could manipulate DNA to “copy” that person
- Unauthorized “cloning”
- What if someone’s map is stolen or lost? And someone uses it?
- Greatly reduces the genetic diversity
- Eventually, as manipulated generations continue, it would get to the point where the majority of the population would be essentially “perfect”
- Employers
- Would chose the applicant with the best of all genomes
- Not fair what genetically dealt
- If in a case of showing the genomes was optional, employer would take known v.s. unknown
- Expensive to map genes, unfair to poorer people who can’t afford it v.s. people who can
- Change Human Behavior
- Different behavior to those who are “less genetically perfect”
- Ex: wouldn’t date someone who was supposed to die at age 30
- Life expectancy panic
- People unhappy with babies’ life expectancy could reject them
- Genetic Discrimination
- Could create superior race or
A desired “breed”- Discrimination against certain genders
· Gender preference in China Economic Collapseo Life/Health Insurance Agencies
§ Wouldn’t need to insure the longer living humans
§ Wouldn’t want to cover someone with a little life expectancy
§ Overall, them going out of business
o Doctors, Medical Personale
§ Receiving less work from patients as they become more and more “genetically perfect”
· Positive- by doctors knowing what any patients’ DNA is, treatment for other diseases would become easier
· Geographical Issues
o How can people in, for example, in Africa receive or even afford their maps?
o Who’s going to do theirs?
*
PROS
· Virtually eliminate genetic born diseases
o Manipulate DNA and alleles to rid the human race of genetically inherited diseases
o Focus science and funding on other “uninherited” diseases
o Save a lot of lives
o Control birth defects
§ Possible negative of this—population growth with fewer limiting factors
· Wanted Information
o Some people may want to know their limitations (i.e. death, cause of death, life expectancy etc…)
o People would be happy with the way they look or are genetically built
· Open access will rapidly progress scientific discovery
OTHER ISSUES
- Government control
- What could they do with it?
- Possibly exclude from others that are not the genetically best
- How will they handle all the pros and cons?
- Can the people trust them?
- What if this information falls into the wrong hands?
- Who should control all this information?
- Who gets to see it?
- Should there be a huge database?
- What can they do to protect the country from a huge potential identity crisis?
i.e. someone hacking into ahttp://www.ornl.gov/sci/techresources/Human_Genome/elsi/patents.shtml
ALLISON'S WEB EVALUATION:
The U.S Department of Energy Office of Science, Office of Biological and Environmental Research, Human Genome Program sponsers and supports the site, however there was no more specific author named. It was last updated August 29th, 2006. The is a government website. It proved to be more factual and provide a fair amount of unbiased information. It was more straight forward information rather than opinionated. The website is pretty effective depending on your role in the project. My role was very based on "hypothetically speaking" rather than fact though. I would recommend this site for the use of the role of lawyer because it offered very factual and relevent information mainly from the legal perspective.
Other information/resources: